April 5, 2008, 12:34 AM: Jace's two operations

Our God reigns and His grace is sufficient for all of our needs. We are daily being renewed and reminded of God’s power and His tender care through the ministry of this little guy by the name of ‘healer’ and ‘warrior’, Jace Garrett Steinhaus. Jace is still with us. Are we showing little faith that we are utterly amazed at his presence with us still? I don’t think so, for all of us are living with expectation for whatever God has plans to do. We don’t pretend to understand His ways, but this experience is teaching each of us to praise him in ALL things. I’ve been rereading Francis Schaeffer’s True Spirituality for my year 3 World view class, and never more has the meaning of that phrase ‘praise Him in ALL things’ impacted me more. All things, my friends, even if the world says those ‘things’ are ‘horrible’. To glorify God is our first order of business.

Although very delicate and weighing only 3 lbs, 12 oz, Jace is tenaciously clinging to this world. Today, he was more alert and even fussy, just like a much more healthy baby. He sleeps so often that to see him cry and express his displeasure while Madelyn and I were ‘babysitting’ was a joy. Aren’t we totally silly? His dad even videotaped him pitching a minor fit tonight while Lauren had the pleasure of bathing him herself for the first time. I wish I’d been at the NICU to witness that chaos! Yesterday, several nurses, who had not been in attendance during the week, came by expressing amazement that he is still with us and doing relatively well considering his many issues. I am convinced he is still here by God’s grace, parent-love, and the many hours he sleeps on Lauren’s chest.

This Monday morning at 7:30, Jace will undergo a 3-4 hour surgery in an attempt to repair a few organs allowing him to go home on hospice. The goal for Jace is to have the experience of leaving the hospital to spend the rest of his time hopefully at home with his parents. To go home, he must be able to have some method other than peripheral IV’s to receive nutrition. Jace did go through two grueling hours of the insertion of a PICC line yesterday (very similar to what a chemo patient receives for ongoing chemo treatment or nutrition). This Peripherally Inserted Central Catheter is inserted through a vein in his hand and is threaded through increasingly larger veins until it lies in the superior vena cava near the heart. Its use is for more permanent IV nutrition while healing from surgery.

Jace will have a team of doctors attempting two separate operations. Monday’s surgery, at the very minimum, will sever the connection of the lower portion of his esophagus (food tube) to the trachea (wind pipe) and insert a gastric tube directly into his stomach allowing him to take breast milk. This repair is of primary importance and will be done first. The gastric tube is easy to maneuver, when compared to IV infusions, allowing Lauren and Dan to more easily feed him at home. But, if his heart is holding up well, and he seems to be tolerating the anesthetic, they are going to attempt to connect the two portions of his esophagus AND try to open the ‘valve or sphincter’ between his bladder and urethra (tube leading from bladder to the outside) so that he can have his catheter removed. If the instruments are too large for this bladder sphincter repair, the urologists plan to open a small ‘drain hole’ allowing leakage of urine directly into his diaper to prevent urine from backing up into his already compromised kidneys. This procedure has the high-falootin’ name of a vesicostomy.  As with most surgeries, we are being told that he could die during the procedures. We know that in Jace’s case, this possibility is higher than average.

We thank you for your continued prayers for Jace and for us. Our prayer is that whatever the outcome of this surgery, God is glorified by all we do. We would love to have all of the above-mentioned repairs accomplished successfully and for his recovery to be rapid, allowing dismissal from the hospital in the next two weeks. Jace’s stay may be short with us here on earth, but already he has amazed us by being around this long and blessing our lives so much. What is it about a baby that by sitting and staring at his sleeping countenance, we are not bored but soothed and blessed? As Lauren said today, “it’s MUCH better than watching a movie!”

Many blessings,
Kathy for the Harts and Steinhauses